I got my usual pre-Inflximab blood work done ahead of schedule as an add on to my recent GP appointment, so these were all done and dusted two weeks before my infusion. In the lead up, I spent time working hard in my new job and treated myself to a mini adventure / Bank Holiday weekend getaway in London. Only to be in agony. I was definitely coming down with something but I persisted to be there and meet up with my old university friends. But I was sick – sick like I had experienced in a very long while and it took me a good amount of time to shake it off. But I did have an amazing time away from home despite that. I came home and was hit with a massive dose of fatigue – usual for my final few days before my infusion – and just let my body catch up on sleep, as much as I could.
So by the time my infusion came round on Monday morning, I was feeling okay. I was hydrated (or so I thought) and off I went to the hospital, remembering that my repeat drug and antibodies needed to be drawn before I could receive my medication.
Get the canulla in first time – internally shouting “WOOHOO!!” – and get my bloods taken. Tricky when a) the canulla plaster won’t stick on its own, so I have a ton of micro fibre tape slapped on my wrist to keep it in place; as my tiny veins can cause alot of resistance once on the pump (more about that later) and b) the vacutane won’t actually let me give my blood up willingly. We had to keep pressing my vein to help it draw into the vial and that took a complete age and was really hurting me. Once that was done and the line was flushed, I felt much better.
The pumps for infusions are different to those that deliver IV fluids and medications. They have a pump that regulates the flow of the fluid into my vein, a line with a filter on the end that helps filter the solution so its finer / purer. I’m not exactly sure as to why this happens but the actual pump means that the machine can calculate the resistance it has to push the liquid through the line and into the body. Small veins mean more resistance so much that it can either cause pain in the patients canulla site or it can blow the vein and stop the medication going through at all. I had to rest my hand in a certain position (alot like the claw hand Chandler has in Friends) so that my resistance was kept low and the canulla didn’t blow. The last couple times this has been a worry of my infusion nurse and my small veins cause her alot of concern.
I was getting creeping abdominal pain almost half way through – the sort of pain that makes you feel nauseous; that I’ve had on and off for a week, ten days now – and I knew something wasn’t right. The infusion finished and my observations were done, I was sent on my merry way.I grabbed a coffee from town and made my way home for some lunch. Came in, put my pjs on and sat in front of the TV for some catch up before the boyfriend came round. But the pain didn’t really go away. I started needing the loo with urgency and it was like a flood gate; everything was just coming out. I’ve never had such a rotten, awful feeling day on my infusion day. NEVER.
And it hasn’t stopped.
I’ve had the delight of spending half of yesterday and all of today off work. Last night I experienced another delightful bout of vomiting – I’m not really a vomiting Crohn’s patient – and more horrendous abdominal pain. All the while; thinking, knowing, that this just isn’t working any more. Why am I putting my body through this? I’m scared to eat because i don’t want to be sick again (seriously, it was truly disgusting and awful) or have god awful pain. The urgency to go to the loo isn’t letting up either, but at least that is something that is almost familiar to me at this stage on my IBD journey. So after phoning in sick to work, I called my IBD nurse.
We had a lovely chat once she returned my call, the long and short of it being that “no, this isn’t working“; agreeing with my doubts since Monday. It’s not a decision to be taken lightly and it certainty wasn’t a happy and cheerful conversation but it was honest and realistic. Having me fail biological treatment like Infliximab was a shock. Back in the Spring when this first happened, I was happy to take baby steps forward and try building myself up to stronger, more potentially harmful treatments by gradually changing my current plan – decrease the time between doses and add in Methotrexate – before we gave up. And that was sound advice after my blood work showed low drug retention and high antibodies. I wasn’t expecting that, nor was my GI. I follow his guidance, I trust his opinion; even when he says he doesn’t know what to do. So to be told today that really, in hindsight we shouldn’t have done that, and they won’t do that in the future in the same circumstances; was disappointing. But I’m okay with it. I know it did good for a while but now… it just isn’t. It’s gotten me this far, so I can find a new step. Just in time for Vedolizumab; my IBD nurse said. I am going to be put forward for it at the next departmental MGT (a team meeting where biological patients and their progress are discussed); but it came with a warning that it doesn’t have a great uptake with non-biologically naive patients – some where between 13% on loading and only up to 40% – it is no way near a definitely sure thing and it is not a fix. I am still looking at new MRI images (which I was expecting to happen, regardless, this Autumn) and going to Nottingham, possibly now even Oxford.
I’m willing to give it a whirl but how much of this is just putting off the somewhat inevitability of surgery? Its the big unknown and the big elephant in the room.